It's probably due to me recently become a parent myself, but the thing that gets me the most (and I'll admit I can barely read it without tearing up), is the last bit about Jackie and her son Matthew, who has not responded to the treatment at all:
Jackie’s son, Matthew, now 24, has not had that conversation with his parents. In fact, he barely has conversations at all. At the group home where he now lives, near a horse farm in the Berkshires, the staff can generally interpret the sounds he makes. Sometimes he types clues on the iPod Touch his parents gave him, because he long ago learned to spell the things that matter to him. But mostly he seems absorbed by his interior life.
...
The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”
Out of personal experience, this is the only way to live with it. Otherwise, someone will be unhappy and most probably this one will be a child that has no way to express the immensity of its distress. When we got the diagnosis for our son, first night, we were sitting with my wife outside, while he was sleeping. She told me "I do not want to force him to be something he is not. I do not want him to be a robot." And we decided to try to instead understand how it is to be him and find the best and most normal communication channel in his world. In the process, I think we all developed and we are extremely lucky to now read this article and know that he is very close to be one of these few cases that are "cured".
I will just leave this here, in case someone is going through the same situation. You will find a million different treatments and theories. Always be present at the treatment and see how it makes you feel. If you feel alright, keep on. If something is feeling wrong leave. Do not overload the child with specialist time, especially as he/she progresses the time the child wants is with you. Work with the child like if you push one of those super market trolleys with one wheel stuck, you have to move and bend your own body. Finally, try to introduce the child to unexpectedness and randomness. Do it gently. Flip a coin (randomness), hide the coin in your palm and let him choose which palm it is in (unexpectedness of someone else's decisions), play rock-paper-scissors. Don't do it all at once. It took us one year form hidden coin to rock-paper-scissors. And finally read. You will discover more about yourself in the process.
Finally, be prepared to face discrimination. It's not the worst kind, but very painful and disappointing. This world will always resist difference in some form, and given the lax network of people with this difference, discrimination against it is more efficient and frustrating.
Edit: if the above sound simple, don't think I would ever imply so. When you feel too tired to do anything, have some rest (if you can) and know that probably everyone, but at least we, felt despair many times.
I have been through concerns about autism with my son who is now three. My wife and I have had long conversations about it. My attitude has always been "let's do our best for him, but in the end he is who he is." I think he's going to be fine, but if it had turned out otherwise, I really hope that I could stick by what I said and be the person that Jackie is. She clearly loves her son as much as I hope I love my son.
But what exactly constitutes "beating" Autism? Is this actually desirable?
I was diagnosed with Asperger's in the mid-90s. I wrote about the experience anonymously for Boing Boing at one point[1].
But the TL;DR is that having lived in both "worlds", the experience of being "cured" was not worth it. The emotional costs were much too high - I just traded ASD for PTSD. I used to be a happy kid with few friends who tinkered with computers. Now I'm a very social guy who will shake your hand, look you in the eye, ask all the right questions to make you feel special. And I'll be miserable the whole time.
> But what exactly constitutes "beating" Autism? Is this actually desirable?
I'd call it the ability to care for oneself independently, generally meaning the ability to hold a job and manage personal affairs. Asperger's and full-blown autism are very different things. This is like comparing a common cold with a life-threatening case of pneumonia.
I worked with autistic people for six years. In the best cases, they weren't able to care for themselves, but they had few enough behavioral problems that they could go on brief 'outings' in the community with staff never more than a few feet away. In the worst cases, they were violent, engaging in serious self-harm, as well as attacking others. I had to take assault response training and use it on a regular basis. They spent little or no time with their families, had no friends, and usually hated the other clients in their group home. It was not a good life, despite the best efforts of the staff.
tl;dr: yes, in my experience, beating autism is highly desirable.
I feel you. The weirdest thing about it for me is that I try to hide this even from myself. I'm trying to be normal all day and think I don't even suffer from autism that badly, but every now and again it just cracks.
In a way I'm like everyone else. I care about friends and family; I try to be productive and make useful things; I like learning about new technologies. At the same time I'm also different and people notice it. They don't ask me when a group in class is going out to celebrate the holidays. I'd chicken out of this social happening and probably say no, but what bothers me is that they don't even ask.
Some vocalize that they notice something is off and I might tell them about autism and give them an outline of what it means. If I tell them I often also ask if they can put it into concrete examples of what I do differently. They never can.
But I'll carry on. I'm normal enough, I can pull through life and make a living. Hope to meet a SO some day who understands me. That probably means she must have her limitations too and I'll have to live with that, but in return she might understand mine and that's worth all the gold in the world.
Hope this isn't too weird a post for Hacker News, I needed to write this after reading about a fellow person with autism. Keep hacking.
I came to say something along these lines. I'm a severe traumatic brain injury patient, and as you might imagine, there have been a huge number of deficits. These ranged from (at first) linear and concrete thinking to (prolonged) poor planning and lack of social tact.
While brain injuries lie in a special place where you can change who you are, there is nothing wrong with living with a deficit. You go about life in a sane and rational way and deal with these deficits like anyone else.
That was the big aha moment for me. At first, I felt like there was something wrong with me and it had to be cured. Then one day I literally thought "I'm dealing with these issues like anyone would." That changed my view on the world; there was nothing wrong with me, just stuff I lived with.
"Beating" autism rings of the undertones of curing something wrong with you. While it's not desirable (at least for me. I haven't been exposed to the positives), there's nothing wrong with it.
I have a friend who is deaf; she had a bible-toting lady come up to her and say "God can cure you!" But she didn't even want to be cured. She's proud and grateful for her deafness.
One of the keys to treatment is catching it early. As the parent of a child with autism, I am always surprised when I talk to people today who still aren't aware of some of the signs that point to the possibility autism. I had assumed they were common knowledge by now.
Things like toe-walking, repeating words or sounds (echolalia), limited or no eye contact, and an unwillingness or inability to point to objects are fairly easy things to observe in your own children or even kids you see around town.
The list in the link below is a good overview, and the few I listed above are considered 'classic' symptoms to look for.
> One of the keys to treatment is catching it early.
And then given the right information. My parents were told I might never cross the street alone or write the letter K in handwriting because it was too complex. Look at me: I type 500wpm and write software better than most in class.
The issues for me arise with planning and social things. I might make plans, but I am never able to stick to them if there is no real urge. If someone is not waiting for something to happen and I don't feel like doing it, it's not going to happen. If I think I can make something in 5 hours and the deadline is midnight, I might start on it 4 hours before midnight. And then there is a whole range of social issues, though I can go to a normal school and normal businesses.
My parents just disregarded the entire diagnosis at 6 years old because, look, I could cross the street not much later. Up until about 13 years old, this approach worked fine. It might have been nice to know what really is going on though.
For any parents starting to get worried: toe-walking is completely normal for many children below 5 years old and even older[1]. Usually they grow out of it as they get older. So I would definitely not consider that a sign pointing to the possibility of autism.
> One of the keys to treatment is catching it early.
Well, one of the keys is treatment early. Catching it early doesn't mean anyone is in any rush to treat it early. Don't trust the doctors if they say you can wait or they aren't acting urgently. Early intervention is key.
The photo caption at the top of the article: "Mark Macluskie, 16, who is no longer autistic."
That's wrong. He's learned coping strategies that let him deal with the negative characteristics of autism, enough that most people don't perceive him as autistic. That's excellent, an ideal outcome. I've done the same with my own autism. I haven't stopped being autistic. There are other traits, many of them positive, that will always be with me, just as they are for Mark.
There's this awful mindset that autism is a sickness, and if you stop acting sick, you no longer have autism. Mark's mother says, “Even doctors say, ‘Well, he must have been misdiagnosed, because a person can’t stop having autism.’ It’s so frustrating. Mark worked so hard. To deny everything he did to get this far isn’t fair.” I know she means well, and has done well by her son, but this shit makes me want to flip a table. Autism is not a mark of shame. There's nothing wrong with being a high-functioning autistic. We need to stop spreading this malignant notion that autistics are damaged by definition.
The theories in this field suggest that many disorders can be explained as the absence of certain knowledge and skillsets: in the case of autism, language skills and nonverbal social skills; in the case of depression, stress management and exercise habits, among others.
Another way to look at it is that there are actually several underlying causes of autism, not all of which must be present for symptoms to appear, and only in certain cases can it be reversed. It appears that a particular and persistent functional deficit in the children treated was that they did not understand how to get other people's attention: maybe various events or genetic factors in early childhood can inhibit the way this is normally learned, and maybe that learning process can be retriggered.
Your summary goes too far. Positive psychology doesn't "explain" disorders. Positive psychology focuses on improving the quality of mental/emotional life in a holistic, as a complement or alternative to trying to cure a specific phyisically-identifiable problem.
For example: If you become quadripelegic (or whatever), positive psychology can help you orient your life and attitude to accomplish your life goals and find happiness within the particular constraints of your condition, instead of feeling depressed and miserable and angry about your situation.
I debated posting this, but there is one part of the article that really resonated with me:
I asked him if there was anything he missed about being autistic. “I miss the excitement,” he said. “When I was little, pretty often I was the happiest a person could be. It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable.
I have a son that "flaps" and we have been concerned about autism for about a year and a half now, since he turned two. He has some autism signs, but our developmental ped says not the classic signs. He can do eye contact, he is social, but he didn't speak, he did have the "daydream gaze."
We've been doing speech therapy now since he turned 2 and we've added an additional speech therapist since he turned 3. His progress has been remarkable, I can have a real conversation with him sometimes (granted, I have to infer a lot, but it's huge from where he was!). He has issues "taking turns", waiting in lines for camel rides at the zoo or getting on the carousel is really hard for him.
So, the flapping thing. My kid is great! I love him as he is! I want the best for him, I want him to be as "normal" as possible. But if he says what this kid says, that he was happier flapping, then I really hope he doesn't lose that. I love him as he is and I want nothing more for him than to be happy. We are extremely fortunate that he's not been diagnosed with debilitating autism and might have what's known as sensory perception disorder instead. But in the end, it doesn't matter, he's a great kid and he's happy and I want to keep it that way.
>“When I wanted to flap, I’d put my hands in my pockets. I think I came up with that on my own. It was frustrating for those two years. It was like smiling and then someone telling you that you shouldn’t smile, that smiling was wrong. Remembering to put my hands in my pockets made me less excited because I had to think about it so much. But as time goes on, you get in the habit. So by the time I was 10 or 11, I wasn’t even feeling the urge to flap.”
I didn't understand what flapping was until I read your comment and searched the op for clarification. Coming across the above quote was...I'm not sure what it was. I do feel a bit more sad about the situation after reading it though.
Please (and I recognize this is likely moot as you seem quite aware) consider what "normal" means and what its worth might be.
Flapping happens due to the child's need for stimming. As the child grows, the nervous system matures and he'll feel less and less the need for it. Plus we all do it in one form or another, even if what we do is more socially acceptable - like nail bitting or gum chewing.
I noted earlier that a friend of mine is an ABA therapist and has been working with autistic children for over 20 years.
He once told me that I was in what he termed 'a risk group for having a child with autism'.
I was taken aback and he went on to explain that while there is no hard and fast rule, it had been noted that there was a prevalence of fathers with particular types of job, namely engineers and computer scientists, amongst the fathers of the autistic children they cared for.
Often the fathers (and on rare occasions the mothers), were also 'within the same spectrum', even if it just manifested itself as social introversion or 'geekyness'.
In retrospect I imagine this isn't often discussed with the parents since throwing 'genetic blame' around isn't exactly productive and it is widely believed that there is no singular 'cause of autism' anyway.
My son has been diagnosed with Asperger's, and after learning more about it, it is painfully clear that both I and my wife and several other close family members have many of the same traits, just not extreme enough to be a "problem".
That is to say, the official DSM-5 definition of autism includes "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning." I definitely feel like I share many of the traits, but they just make me socially awkward rather than significantly impairing me.
So I'll be shocked if there doesn't turn out to be a very significant genetic link. I suspect difficulties so far in finding it have to do with lumping too many people in as "autistic" while excluding too many people who are "sort of autistic." The classes still need a better refactoring. :)
I'm hesistant to talk about it, even in the relative anonymity of my HN username, but swathes of this article read like a script covering the past few years for us.
Thankfully, we've had great success, but not without constant effort and patience on all fronts - at home, out and about, when researching, when dealing with our county and state resources, insurance company and of course all the people who have very strong opinions on all things autism.
In a nutshell, I'm all for the sort techniques the article describes alongside a sensible definition of 'normal' and most importantly selflessness in seeking what's best for your child.
If anyone reading this has an inkling to chat, feel free to use the email in my profile.
Having kids is a gamble. Having a child diagnosed with Autism (as my won was at the age of 2) is a gamble as well. We lost the first bet, but like you, seem to be doing better on the second one.
We (my wife and I) wagered nearly everything - our financial resources, career changes, intense daily effort for years, endless therapies (PLAY, ABA, RDI, OT, PT, Aqua, you name it), and the gamble has "paid off". Upon first meeting few would pick up on our son's 'quirkyness'.
Our ABA records indicate it took my son 600 tries to learn the color red. Today, its his favorite color... and I'm perfectly fine with that. The process changed my son... but he's happy, well functioning, has friends, has opinions, has ideas (some kinda wacky!) but I'd do it all again in a heart beat.
Overall, the effort has cost us (financially, health, atrophied tech skills , even socially), but it's all worth it for him. There's no comparison between hearing a roaring belly laugh from him vs. him perseverating on some toy car.
The field has made significant improvements past ABA with PRT (pivotal response therapy[1]). PRT extends upon ABA by, instead of rewarding with "tickling him or giving him an M&M," using the patient's restricted interest as a reward itself. The "three small laminated coupons" method in this article is somewhat related to the PRT methodology.
Drs. Lynn and Robert Koegel of UC Santa Barbara[2] run a center for ASD treatment using PRT. The idea behind the center is significant parent PRT education.
I feel the urge to bring this up because whenever ASD is written about, no one seems to be up to date on the research. The vaccine/vitamin/mercury bullshit doesn't help.
Throwing this article[3] in here because everyone is talking about a "cure" for autism, while research is providing compelling evidence that there isn't much to be medically cured, really.
This is wild. It seems to support that argument isn't "thing" that you "have". Instead it's a description of the state of a brain. And, perhaps most importantly, that brain state isn't necessarily fixed. Autism isn't a fundamental property of the brain state. It's only a description of the current state. And with great effort, and a lot of luck, that state can be changed. Wild.
Most people with autism have bad digestive tract problems and other inflammatory issues like asthma. Autism is a systemic disease, not simply something in the brain. This is also true of other "mental" illnesses such as schizophrenia and depression.
A friend of mine is an ABA therapist. I sat in on one of his sessions once with the parents' permission (takes place in the family house).
I was amazed at how exhausting it is for all concerned, including the child. The costs are also astronomical since the process is extremely human resource dependent for a long time. For most families who are lucky enough to afford or be funded for an ABA program, the children often start aged 2+ and continue on until mid-teens.
Families are forced to give up almost everything to take part in these programmes. They have my utmost respect.
A related story, the amazing Dr. Temple Grandin[1] whose life was documented in a BBC Horizon documentary a few years ago: "The woman who thinks like a cow"[2].
OMG! This article is a complete breath of fresh air. Autistic people are considered disabled or retarded but they are not. They are actually quite intelligent. In fact, too intelligent that it gets in the way of social development (or rather WE determine them to be socially undeveloped). Their minds race in only certain directions and leaves behind development in social interactions. This lack of social development overshadows and hides all of the other things they are good at.
Autistic people have a difficult time of inferring social behavior. It does not come naturally to them. The behavior needs to be spelled out and explicitly stated.
Autistic people are programmable individuals, but the only problem is that normal people lack the interface to communicate with them.
I am glad to hear of the positiveness expressed in this article, but I do not like the over-sensationalized title "kids who beat Autism". No one ever 'beats' autism.
From the article it seems like some of the symptoms are associated with inadequate sensing or awareness of social cues. That makes me wonder if taijiquan is a good exercise to help with that, as it trains sensitivity to small movements, intentions, and body structure. I'm not sure how well kids pick it up, though.
Three days ago I had the most amazing experience playing in playback theater for a room full of (~100) grownups of the autistic spectrum (living in hostels in the community, mostly with high verbal skills). The stories they chose to share were about couples. A loss of a lifelong partner, I want to see my best friend every day. I remember a story of a young man (in his twenties). He was advocated by his girlfriend to go up and share his story. She didn't talk but her body language was very convincing taking his hand waving it up in the air, smiling, looking directly at the host. He was very shy, and the host decided that it was not that she was pushing him to do something he didn't wanted, but that she was in some way representing him, and that shy people should also get their chance of telling their story. It took a while to understand his story, but in a nutshell her parents invited them (for dinner?) , and his parents did not. He couldn't answer some of the questions (such as what did they do at her parents house), so the host and him stood up hand in hand walked to his partner and she somehow helped him to feel good again (I think she said it was dinner, but they had this connection that was more than that). We played-back the story on stage (improvised play) in which they meet at work as they do every day, and then he talks with his parents over the phone and they invite them over for dinner. I can't describe the joy on his face. He no longer looked down, he was so happy. We were so happy! After the show, we met with one of their instructors and he explained to us that they rarely if ever get a chance to tell their story to someone that would actually listen, not to mention see their story on stage. After the show ended I went outside of the building to take a taxi and I felt in an instant how the war depression is weighting on me again (I'm from Tel Aviv/Israel everyone is depressed from the endless blood cycle). And then it hit me, that for the first time in a month, I was in a room with people that weren't depressed by the war. We are coming back a few months from now to another group and I can't wait.
My 7yr old son is autistic and so much of what this article says and what others have commented, has been the same wild ride for us. He is a happy happy little person that wants to laugh and be loved (and eaten my Zombie Dad once in awhile.)
For the other parents out there, I don't know if they have it in your state but Ohio has things like the Autism Scholarship and grants from different Autism groups. Those really helped with those sessions not covered by insurance or being able to go to a school that provides a little more help.
This article is a enlightening counterpart to the 'emerging neuroscience' chorus, who would have us believe that a full model of consciousness and the brain is just around the corner. That those trying treat autism haven't a clue what causes the onset, and why certain therapies are effective tells me that we really are at the stage of the absolutely primitive models of brain activity.
Our son was diagnosed with a mild form of Autism right before his 3rd birthday. He had little-to-no pragmatic language, although he was verbal. Thanks to Baby Einstein videos, he could name all of his shapes/colors/animals/etc. He could name every instrument in an orchestra. At the same time, however, he couldn't tell us his name, when he was thirsty, when he didn't feel well. There were tantrums... LOTS of tantrums. It was exhausting and painful because you knew that he was upset about SOMETHING, you just didn't know what.
We were very fortunate to be here in Baltimore, home of the Kennedy-Krieger Institute. Our pediatric neurologist there was very thorough -- and painfully blunt -- in describing what we needed to do, and what would happen if we did or didn't. We located a clinic nearby that works with children on the Autism spectrum. They specialized in Applied Verbal Behavior therapy. Walking into the clinic, you would think you entered a Chuck E. Cheese's. There are toys everywhere. Kids are running around screaming. And the adult therapists are doing the exact same thing! When I visited there for the first time only one thing came to mind: "These people are nuts. They're nuts, and we're going to give them $$$$ and our child and nothing is going to change."
I could not have been more wrong. Within HOURS of starting there he could tell us his name and his age whenever we asked. At first, it was obviously just memorized repetition - he said it the same way every single time. That's how it was with everything he learned at first. When he asked for water, he asked for it the same way every time. But, as time went on and he developed better pragmatic language skills, he began to "speak", not just regurgitate. As far as I'm concerned, the people there are miracle workers. He worked with 2 specific therapists during the 2 years he was there, and they showed him an immeasurable amount of love and concern.
At times, reading articles about Autism therapy -- and the comments that inevitably follow -- can be very upsetting. Often, I read about how ABA therapy ends up being traumatic for the child. While I am certainly no behavioral or Autism expert, I don't think that should be the case. My son's therapists certainly pushed him. There were certainly days that were very hard on him. However, days like this were not the norm. And he truly loved going there, because the way they instructed him was through play. They didn't sit him down at a table in an empty room and force him to do things. They simply met him where he was and connected to him there.
It's also quite upsetting to read the comments by parents -- and those with Autism/Asperger's themselves. Often I'll read things like, "There's nothing wrong with my child! They don't need to be 'fixed'!" I'll read comments from individuals with Autism along the same lines, and it's obvious that they have been judged and discriminated against their entire lives. It's wrong. As a father who loves my son more than anything in this world, I will simply say this: Was there "something wrong" with my son? Unfortunately, yes. From a neurological standpoint, absolutely. However, did I look at him like a broken DVD player and say, "There's something wrong with this. Let's get rid of it and get another."? Not a chance. Without the therapy that my son received, the odds are overwhelming that he would not be able to function on his own in society. He wouldn't have been able to go to school. He wouldn't have been able to relate to others or have friends. When my wife and I died, there's no way he would have been able to function on his own. We didn't get him therapy to help US. We got him therapy to help HIM.
Today, he's entering 3rd grade. He's got friends. He's HIGHLY verbal. In fact, he never stops talking. He's insanely intelligent, with math and reading skills approaching high school levels. It's wonderful to see. The only thing that hasn't changed is how loved he is. Does he still have problems? Definitely. He has anxiety issues, as well as ADHD. Rigidity is a major problem. Those are issues we're tackling now. But, I shudder to think about what he would have missed out on had we not gotten him the help he needed early on.
[+] [-] kohanz|11 years ago|reply
Jackie’s son, Matthew, now 24, has not had that conversation with his parents. In fact, he barely has conversations at all. At the group home where he now lives, near a horse farm in the Berkshires, the staff can generally interpret the sounds he makes. Sometimes he types clues on the iPod Touch his parents gave him, because he long ago learned to spell the things that matter to him. But mostly he seems absorbed by his interior life.
...
The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”
I'm without words. Remarkable people.
[+] [-] cgio|11 years ago|reply
Edit: if the above sound simple, don't think I would ever imply so. When you feel too tired to do anything, have some rest (if you can) and know that probably everyone, but at least we, felt despair many times.
[+] [-] craigching|11 years ago|reply
[+] [-] beatit|11 years ago|reply
I was diagnosed with Asperger's in the mid-90s. I wrote about the experience anonymously for Boing Boing at one point[1].
But the TL;DR is that having lived in both "worlds", the experience of being "cured" was not worth it. The emotional costs were much too high - I just traded ASD for PTSD. I used to be a happy kid with few friends who tinkered with computers. Now I'm a very social guy who will shake your hand, look you in the eye, ask all the right questions to make you feel special. And I'll be miserable the whole time.
[1] http://boingboing.net/2013/01/05/pedagogyofthedepressed.html
[+] [-] mullingitover|11 years ago|reply
I'd call it the ability to care for oneself independently, generally meaning the ability to hold a job and manage personal affairs. Asperger's and full-blown autism are very different things. This is like comparing a common cold with a life-threatening case of pneumonia.
I worked with autistic people for six years. In the best cases, they weren't able to care for themselves, but they had few enough behavioral problems that they could go on brief 'outings' in the community with staff never more than a few feet away. In the worst cases, they were violent, engaging in serious self-harm, as well as attacking others. I had to take assault response training and use it on a regular basis. They spent little or no time with their families, had no friends, and usually hated the other clients in their group home. It was not a good life, despite the best efforts of the staff.
tl;dr: yes, in my experience, beating autism is highly desirable.
[+] [-] throwaway58|11 years ago|reply
In a way I'm like everyone else. I care about friends and family; I try to be productive and make useful things; I like learning about new technologies. At the same time I'm also different and people notice it. They don't ask me when a group in class is going out to celebrate the holidays. I'd chicken out of this social happening and probably say no, but what bothers me is that they don't even ask.
Some vocalize that they notice something is off and I might tell them about autism and give them an outline of what it means. If I tell them I often also ask if they can put it into concrete examples of what I do differently. They never can.
But I'll carry on. I'm normal enough, I can pull through life and make a living. Hope to meet a SO some day who understands me. That probably means she must have her limitations too and I'll have to live with that, but in return she might understand mine and that's worth all the gold in the world.
Hope this isn't too weird a post for Hacker News, I needed to write this after reading about a fellow person with autism. Keep hacking.
[+] [-] skierscott|11 years ago|reply
While brain injuries lie in a special place where you can change who you are, there is nothing wrong with living with a deficit. You go about life in a sane and rational way and deal with these deficits like anyone else.
That was the big aha moment for me. At first, I felt like there was something wrong with me and it had to be cured. Then one day I literally thought "I'm dealing with these issues like anyone would." That changed my view on the world; there was nothing wrong with me, just stuff I lived with.
"Beating" autism rings of the undertones of curing something wrong with you. While it's not desirable (at least for me. I haven't been exposed to the positives), there's nothing wrong with it.
I have a friend who is deaf; she had a bible-toting lady come up to her and say "God can cure you!" But she didn't even want to be cured. She's proud and grateful for her deafness.
[+] [-] fecak|11 years ago|reply
Things like toe-walking, repeating words or sounds (echolalia), limited or no eye contact, and an unwillingness or inability to point to objects are fairly easy things to observe in your own children or even kids you see around town.
The list in the link below is a good overview, and the few I listed above are considered 'classic' symptoms to look for.
http://www.mayoclinic.org/diseases-conditions/autism-spectru...
[+] [-] throwaway58|11 years ago|reply
And then given the right information. My parents were told I might never cross the street alone or write the letter K in handwriting because it was too complex. Look at me: I type 500wpm and write software better than most in class.
The issues for me arise with planning and social things. I might make plans, but I am never able to stick to them if there is no real urge. If someone is not waiting for something to happen and I don't feel like doing it, it's not going to happen. If I think I can make something in 5 hours and the deadline is midnight, I might start on it 4 hours before midnight. And then there is a whole range of social issues, though I can go to a normal school and normal businesses.
My parents just disregarded the entire diagnosis at 6 years old because, look, I could cross the street not much later. Up until about 13 years old, this approach worked fine. It might have been nice to know what really is going on though.
[+] [-] BasLeijdekkers|11 years ago|reply
[1] http://www.webmd.com/children/news/20120723/childrens-toe-wa...
[+] [-] jasonlotito|11 years ago|reply
Well, one of the keys is treatment early. Catching it early doesn't mean anyone is in any rush to treat it early. Don't trust the doctors if they say you can wait or they aren't acting urgently. Early intervention is key.
[+] [-] kohanz|11 years ago|reply
[+] [-] PhasmaFelis|11 years ago|reply
That's wrong. He's learned coping strategies that let him deal with the negative characteristics of autism, enough that most people don't perceive him as autistic. That's excellent, an ideal outcome. I've done the same with my own autism. I haven't stopped being autistic. There are other traits, many of them positive, that will always be with me, just as they are for Mark.
There's this awful mindset that autism is a sickness, and if you stop acting sick, you no longer have autism. Mark's mother says, “Even doctors say, ‘Well, he must have been misdiagnosed, because a person can’t stop having autism.’ It’s so frustrating. Mark worked so hard. To deny everything he did to get this far isn’t fair.” I know she means well, and has done well by her son, but this shit makes me want to flip a table. Autism is not a mark of shame. There's nothing wrong with being a high-functioning autistic. We need to stop spreading this malignant notion that autistics are damaged by definition.
[+] [-] scythe|11 years ago|reply
http://en.wikipedia.org/wiki/Positive_psychology
The theories in this field suggest that many disorders can be explained as the absence of certain knowledge and skillsets: in the case of autism, language skills and nonverbal social skills; in the case of depression, stress management and exercise habits, among others.
Another way to look at it is that there are actually several underlying causes of autism, not all of which must be present for symptoms to appear, and only in certain cases can it be reversed. It appears that a particular and persistent functional deficit in the children treated was that they did not understand how to get other people's attention: maybe various events or genetic factors in early childhood can inhibit the way this is normally learned, and maybe that learning process can be retriggered.
[+] [-] gohrt|11 years ago|reply
For example: If you become quadripelegic (or whatever), positive psychology can help you orient your life and attitude to accomplish your life goals and find happiness within the particular constraints of your condition, instead of feeling depressed and miserable and angry about your situation.
[+] [-] pekk|11 years ago|reply
[+] [-] craigching|11 years ago|reply
I asked him if there was anything he missed about being autistic. “I miss the excitement,” he said. “When I was little, pretty often I was the happiest a person could be. It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable.
I have a son that "flaps" and we have been concerned about autism for about a year and a half now, since he turned two. He has some autism signs, but our developmental ped says not the classic signs. He can do eye contact, he is social, but he didn't speak, he did have the "daydream gaze."
We've been doing speech therapy now since he turned 2 and we've added an additional speech therapist since he turned 3. His progress has been remarkable, I can have a real conversation with him sometimes (granted, I have to infer a lot, but it's huge from where he was!). He has issues "taking turns", waiting in lines for camel rides at the zoo or getting on the carousel is really hard for him.
So, the flapping thing. My kid is great! I love him as he is! I want the best for him, I want him to be as "normal" as possible. But if he says what this kid says, that he was happier flapping, then I really hope he doesn't lose that. I love him as he is and I want nothing more for him than to be happy. We are extremely fortunate that he's not been diagnosed with debilitating autism and might have what's known as sensory perception disorder instead. But in the end, it doesn't matter, he's a great kid and he's happy and I want to keep it that way.
[+] [-] obituary_latte|11 years ago|reply
I didn't understand what flapping was until I read your comment and searched the op for clarification. Coming across the above quote was...I'm not sure what it was. I do feel a bit more sad about the situation after reading it though.
Please (and I recognize this is likely moot as you seem quite aware) consider what "normal" means and what its worth might be.
[+] [-] bad_user|11 years ago|reply
[+] [-] junto|11 years ago|reply
He once told me that I was in what he termed 'a risk group for having a child with autism'.
I was taken aback and he went on to explain that while there is no hard and fast rule, it had been noted that there was a prevalence of fathers with particular types of job, namely engineers and computer scientists, amongst the fathers of the autistic children they cared for.
Often the fathers (and on rare occasions the mothers), were also 'within the same spectrum', even if it just manifested itself as social introversion or 'geekyness'.
In retrospect I imagine this isn't often discussed with the parents since throwing 'genetic blame' around isn't exactly productive and it is widely believed that there is no singular 'cause of autism' anyway.
[+] [-] colomon|11 years ago|reply
That is to say, the official DSM-5 definition of autism includes "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning." I definitely feel like I share many of the traits, but they just make me socially awkward rather than significantly impairing me.
So I'll be shocked if there doesn't turn out to be a very significant genetic link. I suspect difficulties so far in finding it have to do with lumping too many people in as "autistic" while excluding too many people who are "sort of autistic." The classes still need a better refactoring. :)
[+] [-] unknown|11 years ago|reply
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[+] [-] incision|11 years ago|reply
I'm hesistant to talk about it, even in the relative anonymity of my HN username, but swathes of this article read like a script covering the past few years for us.
Thankfully, we've had great success, but not without constant effort and patience on all fronts - at home, out and about, when researching, when dealing with our county and state resources, insurance company and of course all the people who have very strong opinions on all things autism.
In a nutshell, I'm all for the sort techniques the article describes alongside a sensible definition of 'normal' and most importantly selflessness in seeking what's best for your child.
If anyone reading this has an inkling to chat, feel free to use the email in my profile.
[+] [-] Jupe|11 years ago|reply
We (my wife and I) wagered nearly everything - our financial resources, career changes, intense daily effort for years, endless therapies (PLAY, ABA, RDI, OT, PT, Aqua, you name it), and the gamble has "paid off". Upon first meeting few would pick up on our son's 'quirkyness'.
Our ABA records indicate it took my son 600 tries to learn the color red. Today, its his favorite color... and I'm perfectly fine with that. The process changed my son... but he's happy, well functioning, has friends, has opinions, has ideas (some kinda wacky!) but I'd do it all again in a heart beat.
Overall, the effort has cost us (financially, health, atrophied tech skills , even socially), but it's all worth it for him. There's no comparison between hearing a roaring belly laugh from him vs. him perseverating on some toy car.
Keep it up and I wish you the best!
[+] [-] Hytosys|11 years ago|reply
Drs. Lynn and Robert Koegel of UC Santa Barbara[2] run a center for ASD treatment using PRT. The idea behind the center is significant parent PRT education.
I feel the urge to bring this up because whenever ASD is written about, no one seems to be up to date on the research. The vaccine/vitamin/mercury bullshit doesn't help.
Throwing this article[3] in here because everyone is talking about a "cure" for autism, while research is providing compelling evidence that there isn't much to be medically cured, really.
[1] http://en.wikipedia.org/wiki/Pivotal_response_therapy
[2] http://education.ucsb.edu/autism
[3] http://en.wikipedia.org/wiki/Neurodiversity
[+] [-] forrestthewoods|11 years ago|reply
[+] [-] guyzero|11 years ago|reply
[+] [-] a8da6b0c91d|11 years ago|reply
Most people with autism have bad digestive tract problems and other inflammatory issues like asthma. Autism is a systemic disease, not simply something in the brain. This is also true of other "mental" illnesses such as schizophrenia and depression.
[+] [-] junto|11 years ago|reply
I was amazed at how exhausting it is for all concerned, including the child. The costs are also astronomical since the process is extremely human resource dependent for a long time. For most families who are lucky enough to afford or be funded for an ABA program, the children often start aged 2+ and continue on until mid-teens.
Families are forced to give up almost everything to take part in these programmes. They have my utmost respect.
[+] [-] iterationx|11 years ago|reply
[+] [-] walshemj|11 years ago|reply
You don't cure Autisiam/Dyslexia or these sorts of learning disabilities you develop strategies to cope.
[+] [-] Renaud|11 years ago|reply
[1]:http://en.wikipedia.org/wiki/Temple_Grandin
[2]:https://www.youtube.com/watch?v=A6aClN6VsTE
[+] [-] nashashmi|11 years ago|reply
Autistic people have a difficult time of inferring social behavior. It does not come naturally to them. The behavior needs to be spelled out and explicitly stated.
Autistic people are programmable individuals, but the only problem is that normal people lack the interface to communicate with them.
I am glad to hear of the positiveness expressed in this article, but I do not like the over-sensationalized title "kids who beat Autism". No one ever 'beats' autism.
[+] [-] CatMtKing|11 years ago|reply
[+] [-] itaifrenkel|11 years ago|reply
[+] [-] tmosleyIII|11 years ago|reply
For the other parents out there, I don't know if they have it in your state but Ohio has things like the Autism Scholarship and grants from different Autism groups. Those really helped with those sessions not covered by insurance or being able to go to a school that provides a little more help.
[+] [-] JackFr|11 years ago|reply
https://news.ycombinator.com/item?id=8069310
[+] [-] pharaohgeek|11 years ago|reply
We were very fortunate to be here in Baltimore, home of the Kennedy-Krieger Institute. Our pediatric neurologist there was very thorough -- and painfully blunt -- in describing what we needed to do, and what would happen if we did or didn't. We located a clinic nearby that works with children on the Autism spectrum. They specialized in Applied Verbal Behavior therapy. Walking into the clinic, you would think you entered a Chuck E. Cheese's. There are toys everywhere. Kids are running around screaming. And the adult therapists are doing the exact same thing! When I visited there for the first time only one thing came to mind: "These people are nuts. They're nuts, and we're going to give them $$$$ and our child and nothing is going to change."
I could not have been more wrong. Within HOURS of starting there he could tell us his name and his age whenever we asked. At first, it was obviously just memorized repetition - he said it the same way every single time. That's how it was with everything he learned at first. When he asked for water, he asked for it the same way every time. But, as time went on and he developed better pragmatic language skills, he began to "speak", not just regurgitate. As far as I'm concerned, the people there are miracle workers. He worked with 2 specific therapists during the 2 years he was there, and they showed him an immeasurable amount of love and concern.
At times, reading articles about Autism therapy -- and the comments that inevitably follow -- can be very upsetting. Often, I read about how ABA therapy ends up being traumatic for the child. While I am certainly no behavioral or Autism expert, I don't think that should be the case. My son's therapists certainly pushed him. There were certainly days that were very hard on him. However, days like this were not the norm. And he truly loved going there, because the way they instructed him was through play. They didn't sit him down at a table in an empty room and force him to do things. They simply met him where he was and connected to him there.
It's also quite upsetting to read the comments by parents -- and those with Autism/Asperger's themselves. Often I'll read things like, "There's nothing wrong with my child! They don't need to be 'fixed'!" I'll read comments from individuals with Autism along the same lines, and it's obvious that they have been judged and discriminated against their entire lives. It's wrong. As a father who loves my son more than anything in this world, I will simply say this: Was there "something wrong" with my son? Unfortunately, yes. From a neurological standpoint, absolutely. However, did I look at him like a broken DVD player and say, "There's something wrong with this. Let's get rid of it and get another."? Not a chance. Without the therapy that my son received, the odds are overwhelming that he would not be able to function on his own in society. He wouldn't have been able to go to school. He wouldn't have been able to relate to others or have friends. When my wife and I died, there's no way he would have been able to function on his own. We didn't get him therapy to help US. We got him therapy to help HIM.
Today, he's entering 3rd grade. He's got friends. He's HIGHLY verbal. In fact, he never stops talking. He's insanely intelligent, with math and reading skills approaching high school levels. It's wonderful to see. The only thing that hasn't changed is how loved he is. Does he still have problems? Definitely. He has anxiety issues, as well as ADHD. Rigidity is a major problem. Those are issues we're tackling now. But, I shudder to think about what he would have missed out on had we not gotten him the help he needed early on.